There is a very long and interesting convo about this on PR. I'll add a few quotes. If anyone knows cornwellsb, please ask him to post here
Here is the thread
Here is the thread
If you want to try HIV drugs on cfs/me it is very very easy in the US. The drug is called truvada ... It is basically viread and another AV. emtricitabine 200 mg and tenofovir disoproxil fumarate 300 mg. It is prescribed as PreP or pre exposure prevention for HIV which a large amount of people have been taking for 5 or 6 years for this purpose. It is supposed to be 95% effective at preventing HIV ... That being said, I have cfs and was recently diagnosed after 5 or 6 years of constant fatigue. I started taking prep as purely preventative measure against HIV about a year ago. I did notice a major change for the better in my fatigue but it did not go away completely. After looking for answers to my fatigue I was finally diagnosed with cfs and put on valcyte and valtrex (along with truvada). I noticed a drastic change almost over night from there and I'm doing quite well. I only put 2 + 2 together today and equate my original slowly getting better this year to truvada but this was not over night. I did notice a change after about 3 months. ... The addition of the other AVs must be fighting off something else. After adding valtrex, my headaches, blurry vision and dizziness ended (sometimes I still get a little dizzy) ... Fatigue is still there slightly but at 20% what it was.cornwellsb, Yesterday at 8:18 PM
Starting truvada moved me from a scale of 5 to about 7. Valtrex and valcyte have pushed me to 8 and some days 9. I am at the gym 6 days a week now which would have been absurd over a year ago.
Getting onto truvada is fairly easy and covered by most insurance (it's 2500 a month) half the gay population in NYC is on it now to prevent HIV infection and there are signs in every subway promoting it in NYC. The company gilead actually pays your copay.
If you want to try antivirals it is fairly easy to get in but requires the same testing as other antivirals every few months.
- The only thing with that is if an underlying retrovirus similar to HIV was suspected, it may result in the development of resistance and inability to control the infection since only nucleoside analog reverse transcriptase inhibitors are being used. It's not as easy to get the other classes of HIV drugs such as integrase inhibitors.undiagnosed, Yesterday at 9:54 PM
Possibly yes but At this point we have a choice of living our lives with cfs and hoping on a future cure 20 years from now (or finding some random herb or other medication that might help) or turning yourself into a Guinea pig. I'm choosing the self medication route as it seams there are very few options. I could also get cancer from all these AVs as well but I intend to try and cut back on some eventually. I've been taking this for over a year before cfs was even diagnosed so there is no turning back now. For now it seems to be working for me but some of this is still theory. Everyone is different. I have no evidence except for the fact that I personally feel better, Time will tell I suppose. I do have a cfs specialist (dr Susan Levine) I see regularly in NYC but everyone is guessing at this point.cornwellsb, Yesterday at 10:20 PM